*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now). We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so on June 11, 2018 she had a PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries. Sunley spent her first 6 days in the NICU, went home for a while, and then spent 26 days in the hospital after her first surgery at 6 weeks old. She had a one week hospitalization for dehydration at 4 months old.
Thanks to Sunley’s earlier-than-anticipated hospital trip, the Labor Day plans were not disrupted and our big kiddos got to come visit. It was WONDERFUL. It’s easy to fully enjoy being a mom when you only do it for 4 days out of the month, just saying. I can’t wait for us all to be HOME together, but any mom knows that the incessant WORK of being a stay at home mom will still present its challenges after this. I wish it was in reverse right now — I wish I had a 4 day/month break from the bigs instead of a 4 day/month visit. That seems way more reasonable. I’m so happy to report, though, that the bigs are doing so well with the new arrangement. There were no tears at the airport and I was actually really impressed with their good behavior. I think I had expected little monsters with all the big changes happening, but they are both behaving better than they did while they were here. That tells me we made the right call. I think the instability of us back and forth to the hospital was harder than these big absent chunks of time. I won’t see them again until the end of the month, but Derek is going for almost a week next weekend.
We had such a wonderful time with them. Day one was, of course, SWIMMING and pizza for dinner. Friday was a LONG walk in Hermann park, where we saw performers practicing at the outdoor theater. So that night, we put the 2 littles to bed and I got to take Hadelyn to that show. It was just so fun, and a big adventure for her, complete with sno cones. We also got to ride the Metro Rail and she was THRILLED. All I could think about was germs, so we both showered as soon as we got home. Still trying to find that perfect balance of life and germs, but I think we’re getting there. I also took the kids to McDonalds at the hospital during the MetroRail ride, and we ran into Dr. Heinle! Hadelyn decided to be shy and not speak to him, and he had to think we were crazy for being at the hospital when we didn’t have to, but the kids love it there! I think it’s good to make some fun memories there for the kids, and not just hard ones. TCH makes that pretty easy with a park, a huge toy train installment, and of course floor 16, which has a library and game room. I can’t overstate how glad I am that we are here at TCH.
Saturday morning, we made plans to watch the OU game at a friend’s house. After a couple hours there, Ruger came down with a violent stomach bug and vomited twice there, 4 times on the drive home (an HOUR drive), and twice more when we got home. So that was Saturday. We did our best to quarantine Sunley, but honestly she was totally exposed because of how sudden the bug was. As disappointed as I was, I was so glad that I got to be the one helping him. Few things are sweeter than a sick little boy needing his Momma and Daddy. The bug was over super quickly, but Sunday we stayed home from church in case anyone got sick. We pretty much stayed inside and watched movies together. Monday (a very rainy day), it was pretty obvious that everyone was well, so we went to the Flight museum and just had a ball. Afterwards, we sent the kids home with my dad and Tia (Hallie, my youngest sister). My mom is in Reno with my oldest sister who JUST HAD A BABY!!!! So Hallie is filling in for my mom in Midland (Yes, we have a pretty awesome tribe). I don’t think I realized how rare it is to have this kind of support system until all of “this.” I can’t tell you how many doctors/nurses have been surprised when they hear about all of the family and church support we’ve received. It’s completely unparalleled and we are so grateful.
Monday night, Derek was snuggling Sunley, put her down, leaned over and gave me a kiss, and then went to the bathroom. Five minutes later, it became very apparent that he had Ruger’s stomach bug. That’s how sudden it was! So that was our Tuesday. I just KNEW Sunley and I were next, but it’s now Saturday and we didn’t get it! However…
Sunley is battling her first cold. Wednesday, she suddenly had a 101.8 fever. I emailed Dr. Ayres just to let her know, but wasn’t overly worried. She suggested going in to the pediatrician just in case. Dr. Smith (another fave) checked her out and all seemed ok, but she definitely has a cold. The fever went away quickly within hours, but Sunley is still having some congestion. Her sats are still stable, and though she’s struggling with her feeds they are still under control. We are watching her closely, but she seems to be getting through it. I’m so happy to see her body doing what it needs to do, even with the extra load on her heart and lungs. I’m glad our first practice round with sickness is here in Houston and not back in Midland (no offense, Midland hospital).
I am still trying to schedule Sunley’s follow-up appointment with Dr. Ayres. The heart center moved to Legacy Tower this week, so I ain’t mad about no one returning my 3 calls…but I plan on calling Monday. And if I don’t get an appointment by Tuesday, I’ll just go up there again and wait for someone to schedule it (another perk of living near the hospital). I’m bolder than I once was ;) I’m trying not to have a get-home goal date, but I can’t help hoping to be home before Christmas…and maybe make the last night of the New Years Meeting. But I know we’re at the mercy of the surgery schedule, and of course at the mercy of Sunley’s post-surgery healing time.